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The problem with all this looking, and changing doctors and going online for virtual appointments etc, would be difficult for a WELL person.
To handle all this and “advocate for yourself” (I’ve learned to HATE that advise), while extremely ill is truly beyond the pale.
I am fortunate that my husband has stuck with me and helps me do a lot of this crap. BUT, even with his help getting to appointments, I am still very sick.
Where is the advocacy for very sick people? I’m not seeing much of THAT. It’s up to me to make all the appointments even with a referral. In the “olden days”the doctor’s nurse would make those appointments while you were there in the office. Or would call you at home later to let you know when you could see a specialist.
Now it’s all on the patient. It’s not right.
I have been at the point of giving up many, many times over the last two years.
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I really wanted to respond to this. For me, finding relief became a very unwelcome and horrific ‘job’. I did it; I spent endless hours researching, lots of $ on useless supplements, begged my neurologist and primary for help. My sister would help me gather information on LC and go with me to appointments to beg for referrals to clinics. I had constant emergency visits to my dermatologist for biopsies, patch tests, etc. It was a job. Sometimes I would be so ill during the many appointments I attended that I couldn’t speak, my face would tic and shake and, worst of all, I would cry. I’m so happy you have your husband to help. I have my sister but she can’t possibly really get it. I also sought out providers, harassed staff to get me immediate referrals/appointments. It’s hard work and so, so awful when you are so ill. I can’t offer solutions but I really get it. Because LC is not understood yet, it can only be treated symptomatically so the patient has to find specialists for all these symptoms…a neurologist for the tremors, a urologist for the cystitis, an ENT for burning mouth/smell problems, a dermatologist for the rashes, a rheumatologist for the autoimmune issues. I actually recruited my two most trusted doctors, my primary and neurologist, and between the two of them, got referrals that called me. Also, I cannot stress how important it is to catalog all your symptoms before these appointments…I used to keep a diary because every day was different. And…above all…do not let let ANY DOCTOR gaslight you.